"the work of God"

John 9:3

"Jesus answered, Neither hath this man sinned, nor  his

 parents; but that the works of God should be made manifest in him."

I have been blessed to see the works of God displayed in my son's life constantly.

I think all to often I take these precious moments for granted.

What an amazing and loving Heavenly Father we

have that is a constant companion in this earthly journey.

Today as I was reading these verses in John, I always turn to these
verses when I am feeling down or discouraged, and every time I take
something new and beautiful away from them.

I thought back to the day that my baby was born and shortly after finding out that he was blind.

I remember how heart broken I was at the thought that my son might not ever be able to see.

We were blessed with wonderful doctors and through their

hands God's miracles were provided.

I will never forget the day......

Bubba was six months old and had three eye surgeries to try to save his vision.

I put this tiny contact into my tiny baby's eye

{after many attempts and tears}

 and then it happened....

my baby saw his mommy for the very first time.

I cried..... oh, did I cry!

I was lucky enough to have my mother in law there with me

 and she captured the moment for me to treasure forever.

I will never forget being told that because of the demyelination

 of Bubba's brain he had become profoundly deaf.

My heart broke again for him.

I felt as though he had been through enough and

why must he endure one more trial.

Then again I was able to witness first hand the works of God displayed in my son's life.

He was blessed with the ability to hear his sweet

 sister's voice because of this wonderful gift from God.

Over and over again I have been blessed with many testimony building experiences of God's love for his children. Bubba has not been placed in this body, with these challenges because of sin, lack of faith, or because of his parents. However, he has been placed in this body with these challenges so that he could be a constant reminder of God's unwavering love for his children. I feel blessed that God trusted me with such a choice and wonderful little child to care for. I am grateful to be able to see these amazing miracles in my life. Yes, some days are hard BUT some days are miracles.

MORE change

There is a reason for the lack of posts lately......

MORE change.

I wrote a post not long ago about all of the

changes going on in our home....

Bubba starting Junior High

Mommy going back to school.

Well, since that post there have been even more.

I will start with the most exciting change in this home...........

Regan lost another tooth!!!!

{this makes tooth #4}

Another BIG change is that we found out that the district is closing the school that the kids go to next year.

This will not affect Bubba so much since he will be moving onto to Junior High but it does affect Regan. There have been meetings discussing the changes, budget cuts, and the reasons for the closure of two schools. Jason and I have been praying and deciding which school is the best fit for Regan next year. She is very sad at the thought of not seeing her friends every day. I am sad for her.

With this change also comes responsibility. The PTA of the school has a lot of money that we need to spend by the end of the school year now. So, we will be funding some fun field trips, assemblies, and one HUGE good bye party. I have taken on the role of assemblies for gen ed and special day. I have a child in both and take responsibility in both. I am excited about some of the things that we have planned. It will be fun.

Another big change around here is with Bubba's new wheel chair. After having it for a few days I realized that it was VERY wrong. Then my friend that is a PT saw it and agreed. When I picked Bubba up from school that first day with it his teacher also commented on how badly it fit him. So, the past week I  have been fighting with the wheel chair company to make the CHANGES needed to make this chair safe and appropriate for Bubba. You would think after over nine grand on a chair they would have gotten it right. Nope, it will take seven modifications.......

new tires

new foot plate

new arm rests

new harness

new handle bars

new hip guides

new transit accomodations

It is CRAZY to think that after fighting for seven months I am still fighting to make the CHANGES to make this chair correct. They are only willing to eat the cost on four of the changes and the others they want to get an authorization from the insurance first....grrrrrrrr.

That means more time, more money, and more fighting.

I have been so busy with each of these new changes that are going on.

One thing that will never CHANGE is that not matter how crazy

things get we will make time to play!

Jason had to work today so I called up a friend and asked her

 if she would like to meet up with us and play.

Something that will never change is our love for dinsey....

and friends that want to play with us! wink!

I am not THAT kind of Gal but if I were.............

I am not THAT kind of Gal ....

that would go shopping for one little girl and then

have to buy something for my own

BUT

if I were THAT kind of Gal.......

If I were THAT kind of Gal than I might just tell you that

Bubba's awesome teacher 

 has an awesome wife

that will be giving birth soon to an awesome daughter

We needed to go shopping to buy baby awesome some AWESOME outfits.

While we were out shopping Regan spotted this beauty......

If I were THAT kind of Gal I might just tell you that

I first told her...."no we are shopping for baby awesome."

BUT if I were THAT kind of Gal I had to give

in to my fashionista's amazing find...right??

If I were THAT kind of Gal than I might just tell you how

HARD it is to find little girl clothing in a sive 7....

 not tween clothing BUT little girl clothing.

{why is everything so short and tight?!?!?}

Oh, and Yes... it came with a

matching dress for Katie doll. :)

If I were THAT kind of Gal

than I might just tell you that the

 second we got home she tried it on and

squealed with delight when it fit JUST right. :)

I am not THAT kind of Gal that would end up buying more than one outfit for my little fashionista and then go on to buy a ton of cute PINK outfits for baby awesome despite being told that mommmy awesome said no pink. Oh, yes and there will be matching hair bows also... wink!

BUT since I am not THAT kind of Gal I guess there is nothing more to say here... :)

{LOVE}

To say that my son has been well taken care of at school,

would be an understatement.......

He has been LOVED.

I have been working on a gift for the

teachers as an end of the year gift.

It has been hard, emotional, and

sweet all at the same time.

So many touching pictures of these

wonderful people caring for such special children.

{I had to take a break... too many tears.}

I am not sure I will be ready to

say good bye when the day comes.

How can you even begin to say

thank you for a gift as amazing as Love?

I don't know what I would do with out her...............

{Every time I look at this picture I tear up}

She would rather push him than the shopping cart.

She does not like to see other children at school helping him....

that is HER job!

She LOVES him more than any sister has

 ever loved a big Bubba before.

Who doesn't LOVE.....

a nice LONG weekend!

We sure do!

Saturday we were LaZy!!!

Bubba needed to rest so the two of us just hung

out at home, I cleaned and he watched movies.

Daddy and Regan went and got much needed hair cuts.

{I got several phone calls..... "what do you

want for regan... how much can they trim off"} wink!

He handled the stress well and they

both returned home looking perfect!

Later that night we got a DATE NIGHT!

Wahoo for Date nights.

Jason's good friend Ricky got married....

you know one of those friends that you thought would

be a forever bachelor. Luckily he met an AMAZING gal

that was willing to take him on. When the video goes up

 I will have to share their exciting song to each other

after being married.

It is sure to be a you tube sensation! :)

We didn't think we would both be able to go...

still NO nurse

and Jason's parents had plans.

But luckily this awesome best friend,

babysitting duo came to our rescue!

This is Jason's Aunt Sue and Bubba's Ms. Lauria.

Ms. Lauria wasBubba's aid in his very first Pre-K class when he was three.

She still comes to his birthdays and is always willing to help out when we need her.

THANK YOU both..... y'all are amazing!!!!

Sunday morning I woke up nice

and early so that I could....

babysit TWINS

It was our Stake confrence at church and they

had an early morning meeting for new members.

Elder Hinckley was speaking and we didn't

want our friends to miss out. 

Aren't they adorable!!

Who knew all you have to do is give them pancakes and

a medical pole and they would be happy... wink!

Then our little fam got dressed and we

 headed out to an AMAZING stake confrence. :)

Then if our weekend couldn't get any better.....

Today was a holiday and the kids had

the day off from school!

You know what that means......

We PLAYED!!

We met up with some friends at the

 Aquarium of the Pacific. 

It was such a FUN weekend!!!

Now, all I want to know is.....

When is the next holiday???

Don't mess with this Mama!!!!!

One phone call after another I heard reasons excuses as to why Bubba’s wheelchair was not ready. After SEVEN moths of being patient this Mama finally LOST it. I did not scream, curse, or become someone that I am not BUT I did stand up for my Bubba! I spoke to our rep early this week and she told me that the new frame was in and looked perfect! Yes, finally a light at the end of a VERY long tunnel. I called every day to find out when it would be ready for him. She told me that she thought it would be ready by Friday. So, I waited this morning for a phone call, a phone call that never came. I sat in the neurologist office with Bubba staring at my phone. I didn’t want to miss THE call. Have I ever told you how much I LOVE Bubba’s neurologist?… because I do. Oh, she is AMAZING. After changing Bubba’s medications yet again {maybe this will the be perfect dosages and prescriptions… maybe} I told her about our wheelchair DRAMA. She walked over and gave me a hug, as she did this my eyes began to well up. Why can’t everyone be this wonderful??? The world would be a better place if they had a little Dr. L in them. After we left our Dr. L’s office we walked over to see Uncle Bill in the rehab center, it is right by the hospital. No matter how hard I tired, even Uncle Bill’s sweet hugs just couldn’t get my mind off of this phone call that had NOT come yet. Bubba and I picked Regan up from school. We saw Bubba’s Ms. Sherill in the Hallway…. “So, did you get it???” I had to tell her about my disappointing day. After I got the kids in the van it became to much, I had enough of this waiting. I called her to find out if it was ready. She then explained that it was almost ready but they were waiting for “the guy” {you know the one that was rude and sent me into tears} to fix it. She told me that she would call me when he finished but he would not be able to deliver it until next week. Then it hit me… he is mad at me for complaining about him and is taking it out on Bubba. Well, this Mama doesn’t play that game!!! I entered the address to their office in my GPS and my two babes and their crazy Mama were off. I wasn’t sure what I was going to say or do BUT I knew that I was NOT leaving with out his chair. An hour later I receive a phone call from the rep, she informs me that Bubba’s chair is ready. I then replied “good I am only 1.7 miles away.” There was dead silence on the other end. “uhmm…. OK we will see you in a minute Mrs. Presley.” We got the ware house and had to WAIT but I didn’t care…. I smiled every time someone came in and very nicely let them know what I was waiting for. Then “THE GUY” came out with Bubba’s chair. I smiled and told him how beautiful it was. He looked surprised, I think he was expecting a screaming crazy woman. He then apologized over and over and thanked me for my patience. Bubba’s was so excited when we put him in the new chair and fitted it for him. I could not believe how light it was as I lifted it into the back of my van. Once I had it in the van I took of off…. I didn’t want someone to come running out and tell me that there was a mistake and take it back. Wink! We hit AWFUL LA Friday holiday weekend traffic. You know what…. I didn’t even bother me. Every time I looked in my rear view mirror their it was staring back at me, this beautiful yellow and black wheel chair.

Isn't it beautiful!!! 

Now, we have on last important thing to do......

Name him.....

Regan thinks we should name him Bumble Bee ...

 You know, like the car on transformers. :)

{Strength}

 Smiling does not necessarily mean you're happy...
sometimes it just means you're strong...

{today our little man needed

a little break, a little escape.}

Lately his nights have been hard {Ok, when are they not??}

and he needed a major dose of Disney Magic to help.

While we were at Disneyland we met some new friends. 

I think Regan is in love.... 

{he even walked her out and held the door!}

Bubba took care of us all on the train. :) 

I am always amazed by his smile and his strength :)